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How a good idea, goes bad

I don’t know if you have heard of, or if you have ever considered having your medications delivered to you in blister packs. It had been suggested to us by Laurie my social worker when we told her that it was one of the many jobs, that Adam has taken on. I asked him to, when I realised that I was making mistakes, I frequently missed taking one or two different ones, for anything up to a week or longer. I had also been finding dealing with the doctor’s receptionist and even the chemist both difficult and confusing. He has been running thing perfectly, since the chemist, showed they were totally incapable of the simple task of ordering the correct drugs, at the correct time. They had been my first port of call, as I really didn’t want to give more work to him, than needed. No matter what I wanted, Adam took on the whole thing, ordering, storing and dispensing them into small plastic cups for me to take throughout the day.

When we heard that the chemist could split my drugs up, presenting them in time slots for each day, I thought that we had found something that might just work, where my earlier plan had failed to. At this point, we hadn’t seen the pack and to be honest, knew nothing more than the basics. Both of us made an assumption, that we would still order my drugs, the chemist would continue to collect the prescription when we asked them to, then they would make up the packs for the next two months, and simply deliver them all at the same time. Clearly, some drugs couldn’ t be in the pack, some because they are to be taken when needed, others, as they need to be placed in water. In general, we thought it was a good idea.

then yesterday morning, I had a somewhat confusing phone call from the chemist. As expected, the results of my blood test showed that I do require to be on the potassium tablets, they were putting together the prescription as we had requested. Adam had also ordered another drug and on that prescription, it said dispense weekly? It had something to do with the blister system, and I quite simply found myself confused. I didn’t have a clue what they were talking about, so I asked Adam to drop in on his way home and find out exactly, what the blister system entailed.

When he came home, he was armed with one of the blister packs. empty of course. He also had a full picture of how it all worked. Apparently, we would once more be handing the whole thing over to chemist. They would order the drugs as needed, (unlikely), split them into the blisters and deliver one pack every week. Before he told me all of this, I had spotted two huge problems, with the blister pack itself. The pack looks somewhat like a book, when open, it reveals seven rows, of four small square containers, into which my meds are supposed to be placed, then sealed with a paper cover, which you burst to get the pills out. The first problem was clear, the containers would only take a few pills, not anywhere near the number that I take in the morning or in the evening. The second, the container are so small, that I would have great trouble getting them out, without sending them all over the place. I manage already to find myself searching the floor, for pills that I drop. I am quite sure, that I would be doing so daily with those packs.

Then there is the problem of finding the trust, that I don’t have in the chemist to actually get it right. I would be having to put my trust in someone who has already proved, can’t get the ordering part right. On top of all of this, there is the annoyance of having them come to the house once a week to deliver the packs. As it is, they can’t give me even the slightest idea of the time that they will be calling. I find it annoying enough, that they come here more than once every two months. The comings and goings of the district nurses and my carers are annoying enough, and they at least give me a one hour period, within which they will arrive. I frequently don’t answer the door, unless I know someone is due. It is rarely for me and the energy that it takes going back and forward to the hallway, is draining. I would be doing it all day long until they arrived. That kind of agitation in my day isn’t something that I deal well with. I try my hardest to keep my day’s stress-free and although it may sound like nothing to most people, it is enough to both wear me out and leaves me in not the best of moods.

I can see that the packs may work well for some people, but they simply aren’t for me. Adam has equally put the idea down firmly. I could see it in his eyes and hear it in the tone of his voice, even as he was giving me the details of how the system works. At first, I thought that he wasn’t wanting to let go of the job, he truly likes doing things for me and the whole idea of caring for me appeals to him. Almost everytime that I have suggested a way of doing something, so that it wasn’t going to take his time, he has gently fought it. In this case, though, he actually had good points to put forward, as to why it wouldn’t work to our advantage, not just his. It can be a very hard tightrope to walk at times, as he simply doesn’t see that those suggestions are meant in a caring way for him. There will be a time when he will have to care for me, almost constantly, so for now, I want him to have his life, one not totally cluttered by me. Although I know he sees it totally differently.

I know that I have said previously just how difficult it was to accept help from outside carers, to begin with. It has become easier, but I do still find the help that Adam wants to give me, in some ways even harder to accept. It’s not because I don’t want him helping me, it really is because I don’t want to burden him with too much, especially when there is another way. There is so much advice and help out there for family carers, but everyone seems to forget the problems of those being cared for, simply because we care for them. When you are in love with your carer, the difference is huge. I want to care for, protect and do what I see as the best for him, just as much as he wants to do so for me. Most importantly, I want him to have a life outside of me. No, not only his job but a life, a life where he does what he wants without constantly worrying about me. Of all the things I thought my health would bring my way, tightrope walking wasn’t one of them.

You’ve expressed this beautifully. For me, not using Blister packs, when I drop a pill as I remove it from its packet; I have a mad and frantic search for the pill before one of my dogs gets hold of it! Fortunately, that hasn’t happened yet. These things seem so simple, yet they are far from it.

The longer I am disabled, the more and more so called solutions, I find simply don’t work for me. I know there has to be someone out there who thinks they are wonderful, otherwise they wouldn’t be made. I just wish they would remember, one size, never fits all 😦

Having to care for myself, it is exhausting to chase down all my prescriptions, calling the doctors making sure I have plenty of refills, tracking the boxes and loading my containers for a 2 wk period. I understand walking that tightrope.

I hate the blister packs. They’re so difficult to open when I need the medications the most. And, when I drop a pill my service dog immediately wants to pick it up for me. That’s bad for him because even a tiny bit of the medication might harm him and it ruins the pill. I’m not taking it after it’s been on his tongue!

I feel the same way about my husband.
You are right that there is so much out there about the care giver but not much out there for the person being cared for. How we care for the carer. It is a tightrope that we have to walk. Unlike you I lean on Stuart more than I probably should. I want him to have a life outside of this mess called me. But I also haven’t gotten to the point where I want help from anyone but him. I know he loves me and doesn’t see it as a burden. I have long since stopped seeing myself as a burden to him. I’m his wife and it’s just the way things are. We work around it.
I found someone to cook our meals, it’s a bit expensive, but not outrageously so. When it got to the point that I couldn’t cook and I have a restricted diet and he hates to cook. Well it was time for me to help. This has taken a lot off of him. It was a way I could help. That was important to me.
I couldn’t do the blister packs either. Too many meds. Too much to trust in someone else.

Your words sound like Adams, he says it all the time, that I’m his wife, and it’s just the way things are, but it doesn’t change that tightrope much. I don’t feel like a burden either, but still I want him to have his life.

I’m glad you have found some help which helps both of you. It’s important to feel we are giving something back, but finding a way to do so, is the hard bit. For me, well I do the shopping and I always put something in that I know he loves, that he didn’t ask for. It’s not much, but I enjoy knowing I have given him something he likes. 🙂

Ah, I totally understand about wanting to protect the person you love from as many caretaking duties as possible for as long as possible. I’m lucky in that I don’t require much from my hubby as of yet, but we both know those days are coming. He’s taken on most of the household stuff even early in our relationship (we’ve been married for 15 years, together for 22), but now does just about everything – cooking, cleaning, groceries, plus he’s always done the laundry).

Now, like you, he’s helping to remind me with my medications. I have one of those hard pill holders with the lids, so you put in the drugs for the morning and evening slots (you can get ones for afternoons as well, but I only take one afternoon pill, so didn’t bother). I have the times for my drugs in my phone to go off plus he reminds me to take them when the alarm goes off because sometimes I think I have, and I haven’t – and I don’t realize it until I start feeling the withdrawal sensations.

We’ve just bought a house and whether on purpose or not, we made sure it would be easy to live in to accommodate my needs as my health challenges grow – if I need a wheelchair full time, it’s set up for it. The bathtub already has several grips and such to get in and out and a transfer bench would be easy. I never bathe unless he’s home and more and more, I need his help to wash up.

We’re blessed to have partners who love us enough to take care of us, through sickness. Adam sounds like a wonderful guy and I think that you should let him do as much as he wants for you. It’s his love language and a true gift, and I think you would be doing him a disfavour if you tried to take that away from him. Sending you love and empathy – it sounds like we’re both going through a lot of the same things right now, so I truly understand how you feel. Gentle hugs.

We did look at those dispenser boxes, in fact, I did have one years ago when I was still working. Even back then it was a squeeze getting my meds in, now, it would be totally impossible. So we use little medicine cups. Just like your husband, mine has taken over everything domestic, accept the shopping. I do that online, he just makes the list.

From what you say, I am that bit further down the line, as I now do need outside carers, for certain tasks. I have no desire for him to give up work and become my full time carer. (Not to mention, his wages do come in handy.) I know the day will come when I need full time care, but even then, I want him to work, because of all the other things that work brings. It’s finding the balance, and that is what is now so hard. What I do know, whatever the change, it has to be done gently. 🙂

Hello Pam, Glad to see you are still at it.This might work for you as it did for me hope so.I got a tray with antislip liner.Put my bottles on it,most of my meds are one daily soMike undoes the child locks,and I manage the pills.I don’t lose the pills they occasionally drop onto the tray but that’s ok.One lunch time pill is OK to manage,the remainder I have at night before bed and usually have no problems.I know you understand I have the fingers crossed when I write that.Hope it proves useful to you.As always sending love Nx

I quite honestly wouldn’t be able to manage that. I need Adam to put the right pills out for me, to take at the right time. I honestly wouldn’t be able to know if I took that one just now, or later. I was getting them all mixed up, which was why I asked him to take it over. I do see how it could work if you only have a few meds, but my list is huge, as are the numbers I have to take. Thanks though for your suggestion 🙂

Interesting what you say about blister packs. The concept is good, however, as you illustrate so well not for everyone. It’s brings to mind Tylenol or aspirin bottles that have an easy open top for people with arthritis. Maybe something more like a cash register would be better where instead of it giving you a nickle of change it gives you a pill or a selection of pills in a dispenser that you can scoop up with s spoon or other manageable utensil, or those pez candy dispensers where you lift the top and out comes a pill easy to pop in your mouth. Maybe they could put a pill dispenser in your fridge door instead of an ice maker ….uh oh… I think I might be rambling a bit…lol

I’m sure there is an answer, but like a lot of things I have tried that were supposed to make my life easier, actually didn’t. Just because we are disabled, doesn’t make us the same as the next person any more than what we might have done for a living. One size never fits all 😦

You have such different ways of dealing with things than we do. I love reading about the similarities and differences. But I totally agree with your thoughts….those packs would never work for me.
I’m still able to manage keeping track of scripts and when I need refills. But when the doctors aren’t being cooperative and returning calls or calling in refills on time, my husband jumps in and helps because I’m so flustered and upset.
I hate that we have to deal with all this! I don’t know a single chronic illness patient that wouldn’t give anything to find a better way to juggle the craziness!